Laparoscopy soon… so much pain… reassurance needed please

[plant_mum]

Hi everyone, I’m new here. I’ve tried ringing the Endometriosis UK helpline a few times now but haven’t got through. Really I’m just feeling very alone and scared and am looking for some reassurance (so no horror stories please). I’m 34 and have been getting endo symptoms for about 3-4 years which started as painful periods and have now progressed to full on back pain, leg pain and bladder pain pretty much the whole month. I also experience nerve pain, mainly in my bottom. Over the years I’ve repeatedly tried to get referred to a gynae on the NHS and when I finally did waiting lists were over a year long so I’ve gone private and am getting a laparoscopy at the end of the month. My gynaecologist seems to be brilliant and has great reviews, but I’m scared about so many things. How bad will the endo be? Have I left it too late so it’s untreatable? The laparoscopy is diagnostic but can treat mild-moderate endo so what if it’s really bad and I have to wait another year or so to get it treated on the nhs? (I can’t afford another private operation!) Is this is it now, will I always be in pain? I’m missing out on so much and can barely work. I feel like I’m living a half life at the moment. And there are obviously the concerns around fertility. Would just love to hear some reassurance and tips to keep me sane over the next few weeks while I wait for the lap. I am scared as it’s my first experience with general anaesthetic and first big medical procedure but I mainly just want it sorted and to get on with my life.

[TedLocat]

Hi plant_mum,

Firstly, you are definitely not alone! ❤️

I had my first laparoscopy and first experience of general anaesthetic in March this year, and I was very nervous too. But I hope I can reassure you, in that ‘the fear of the unknown’ was so much worse than the operation itself!

No matter what the outcome of your diagnostic lap is, there are always options and things to try/consider, so don’t give up. In my case, I was diagnosed with severe, extensive endo including on my bowel and bladder. Because fertility is my priority right now, I’ve been put on zoladex injections. I will be coming off these in a few months in preparation for ivf treatment. I am likely to need further operations in the future, but your own treatment plan will depend on what your priorities are and how you want to move forward. You have to do what you feel is right for you and your body ☺️

I hope this helps, but feel free to message me any questions.

And I wish you all the best with your laparoscopy!

[plant_mum in reply to TedLocat]

Hey, thank you for this ❤️ I’ll message you.

[Boomer988]

Hi I so sorry you are going through this it’s a horrible nasty disease .my daughter has suffered from endo for years now. She’s has 6 laparoscopy .. She is now awaiting another referral to hospital as she’s been diagnosed with one of her ovaries stuck to her womb. It looks like it going to be a long wait I was wondering who you have gone private with if you don’t mind me asking .. she’s suffering a lot lately and I hate that she’s in so much pain. I hope you laparoscopy goes ok.

[plant_mum in reply to Boomer988]

I just phoned up my local Spire hospital and saw a gynae four days later for £200. Beats waiting a year on the NHS then another year for a lap!

[Boomer988 in reply to plant_mum]

Thank you x

[0Jasmine]

Hi,

Sorry to hear you’ve been going through so much. I’m 31, had pain for nearly two years and have just recently had a laparoscopy (5 weeks ago). While it doesn’t take the nerves away, it’s normal to be anxious about surgery. I got so nervous I nearly didn’t go in for the surgery. It’s a weird position to be having an operation not knowing what they’ll find or how you’ll feel so be gentle with yourself. I wrote myself a note which I read daily before the op, that it’s a common operation, they know what they’re doing etc. I was told it wasn’t endo so went in thinking I had an adhesion. When I woke up and was told I had endo it was hard but I was glad he did ablation and hoping for some relief from this. I still find it hard getting my head round it all but now I know I have been able to get some books about nutrition and will look at diet changes. It’s hard not to fast forward years down the line but try and focus on here and now and take it a day at a time. Xx

[mimilover]

HiMake sure they get all of it out. Scrape it off everywhere.

Make sure you tell them this 100 times .

Make sure you do the things after words that will make it at least lie dormant. They (lesions ) have roots. The only negative thing I’ll say is I WISH I HAD BEEN TOLD IT HAS ROOTS.

Please know this . Every body is different so I hesitate to give advice .

I didn’t realize the estrogen I was taking (oh and I doubled it to make me even more sexual ) was watering my garden of lesions . When I went off the estradiol …..that’s what I was taking after trying several others …my pain has lessened much.

Just know I overheard the doctors say “she’s a mess in there I don’t know what we’ll find “. I was on the operating table . I said “I CAN HEAR YOU”. They put me out right away . So I’ve had two operations.

NO DOCTOR TOLD ME IT HAD ROOTS. One at age 26 and 39 …..and now I’m almost 65.

So my first one was almost 40 years ago. Luckily endometriosis has been recognized with at least many gynecologists. And correct information.

The surgery is easy ……just make sure you get correct information for after.

❤️❤️❤️❤️❤️